Wednesday, July 30, 2008

3/4 through Phase 2

Tomorrow I start the last level of Phase 2. Hopefully it will last only 40 days.

The past 40 days, as time has worn on, life has become increasingly like the CFS relapses I remember. It's not as bad as when I first got sick (that was like having mono for two years) but it is almost as bad as--to pick a couple of relapses at random--my first 2005 relapse (when I stopped working) and the second one that year (after Hurricane Rita). The main symptoms, besides fatigue, are a heaviness in my chest and limbs, some joint pain, some muscular pain, brain fog, and not really caring about much of anything. Sometimes, usually late at night and depending on the dosage schedule, I get this itchy feeling all over my body under my skin, which usually makes me anxious and restless for a little while. And for the past few days I've been seeing some edema, craving salty foods, and a bit grumpy. The latter could of course be plain, old-fashioned PMS--it's hard for me to judge. In the olden days I used to gain (and lose) as much as seven pounds every month--which at my height and weight is a full clothing size or more.

Although some of these symptoms are annoying, there's nothing truly dreadful. I think the most important thing right now in fact is to maintain an awareness of the symptoms, especially the neurological ones, because as the MP starts killing bugs in my brain it will probably become harder to see the forest for the trees and so keep my perspective.

The most significant thing is that despite the fact I'm "as sick as I was" instead of "feeling better," I know that with the Marshall Protocl, there is an endpoint. It may be years from now, but it will get here. After literally a full decade of blindly hoping that tomorrow, next week, next month, next year I would feel better and be able to live a normal life, it is so much easier now because I know that eventually I WILL be able to live a normal life. There is certainty, not just helpless wishing.

Thursday, July 24, 2008

Trying to go out more

My niece's wedding last weekend was wonderful. I was so grateful to be able to go. Folks seemed to like my hat/scarf/gloves/glasses and I practiced my Royalty Wave. The wedding was a couple of hours' drive away and was outdoors at 7pm (sunset is at 8:30). I used the prescription cream on my face and took extra Benicar and the sun really wasn't as oppressive as it was during my outing earlier in the week (when I took the same precautions and was out for a shorter period)-- who knows why? I used a sunshade while in the car and after we got to the venue rested in a room with no windows. After the ceremony, I kept my paraphernalia on while near windows inside until it got dark.

I even managed to dance with the groom (to an Elvis song!) but I was too tired to join in the line dancing. My parents nearly won a dancing contest, for the couple married the longest! I had never seen them dance before as my father usually refuses to dance but to everyone's utter shock he took my mom to the floor and they were only defeated by a couple who had been married one year longer. They celebrated their 42nd wedding anniversary this week!

Since that big adventure I've been resting a lot, but I did go out the other night at dusk. I didn't use the cream/hat/gloves/scarf but I did take extra Benicar and wear the NoIR glasses. It went well but I have been really tired since.

And now, for something completely different:

I looked up the word "paraphernalia" to make sure I had spelled it correctly and learned that although its modern usage is generally personal equipment or accessories, the historical definition is "the separate real or personal property of a married woman that she can dispose of by will and sometimes according to common law during her life!" Wow, who knew? The etymology is from the Greek (via medieval Latin of course) and is "bride's property beyond her dowry, from para- + phernē dowry, from pherein to bear."

Thursday, July 17, 2008

out during daylight

I actually went out this week. I went to get my hair done. My niece is getting married this weekend and so vanity required that I get it cut and colored.

The good news is, all the hormonal adjustments the MP has caused mean that my hair is healthier than it's been in years. It's thicker, smoother, stronger, and isn't falling out or breaking all the time. The bad news is, it's still coming in about half white (it started going gray when I was 27, shortly before I got sick). The good news is, my stylist got the color to exactly the color it was when I was a teenager! Happy, happy, joy, joy! Someday my natural color will be back. There was an 80 year old man on the MP whose hair had been white for decades and it suddenly started coming in dark. So there's hope.

I was out for about four hours and really found the sun oppressive. It didn't make me feel ill, but getting out of the sun was a relief. During the drive home (heading west) I put a scarf over the lower half of my face (along with hat, NoIR sunglasses, gloves, long sleeves, jeans, and boots) and the relief was palpable. When I got home I wanted nothing more than to retreat into my dark bedroom; I even shut the door which I don't usually bother to do. When I shut my eyes I saw flashing lights. Eek! Fortunately the flashing went away after twenty or thirty minutes, and I felt much better. Since then, just a little extra tired.

My niece is getting married on Saturday evening and I will probably be out during daylight for about six hours. It shouldn't be too bad as I'll be well prepared.

Wednesday, July 9, 2008


I have no excuse for not writing for three months. Well, I have an excuse, but it's not a good one. I'm tired.

I passed the halfway mark in Phase 2 of the Marshall Protocol a couple of weeks ago. With any luck, my current schedule will allow me to start Phase 3 by about the time of the autumnal equinox. So that makes Phase 2 about six months, at least on the schedule I chose. I could have pushed through it a little faster, but slow and steady wins the race. And kills more bugs.

It's hard to write about the last few months. There's nothing dire or dreadful, but I've been feeling a little more like I did when I first became ill, or when I relapsed, than I did during Phase 1. I have no motivation to do anything constructive, even write whiny blog posts. I watch way too much TV, read books, and play games on Facebook. Every now and then I do something crazy like play the piano or dust. But my "to do" list hasn't gotten any shorter since my last blog post.

But lest this sounds morose, let me assure the world that the MP is working and I am not depressed. There have been some signficant physical changes recently and although I am as tired as ever I know that my immune system is coughing back to life and killing bugs. It's just going to take time.

I will try harder to post regularly.